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Thank you for taking the time to visit my JustGiving Page.  I am running the Virgin London Marathon 2012 to raise money for The MPS Society.  This is a very personal cause for me and one which I am extremely passionate about: my 7 year old nephew Bobby suffers from MPS III (Sanfilippo Disease).  The MPS Society (<a href="http://www.mpssociety.co.uk/">www.mpssociety.co.uk</a>) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases including Sanfilippo Disease, their families, carers and professionals. The Society is a registered charity entirely supported by voluntary donations and fundraising and is managed by the members themselves. The Society has the following aims:   To act as a support network for those affected by MPS and Related Diseases To bring about more public awareness of MPS and Related Diseases To promote and support research into MPS and Related Diseases   Mucopolysaccharide and Related Diseases are individually rare; cumulatively affecting 1:25,000 live births. One baby born every eight days will be diagnosed with an MPS or Related Disease. These multi-organ storage diseases cause progressive physical disability and, in many cases, severe degenerative mental deterioration resulting in death in childhood.   Sanfilippo disease is a mucopolysaccharide disease also known as MPS lll. It takes its name from Dr. Sanfilippo who was one of the doctors from the United States who described the condition in 1963.  This is a rare condition affecting one in 85,000 live births. Over a ten-year period between 1980 and 1990, 88 babies with Sanfilippo disease were born in the United Kingdom.  At present there is no cure for any of the MPS diseases.  The disease tends to progress through three main stages.   The first during the child's pre-school years may be a very frustrating one for the parents. They begin to worry as their child starts to lag behind their friends' children in development and they may feel they are being blamed for the child's overactive and difficult behaviour.   The diagnosis is often made very late as some children do not look in any way different and their symptoms such as diarrhoea, frequent respiratory and ear infections and boisterous behaviour are among the most common seen in all children. The doctor has to be perceptive enough to recognise that something serious is wrong and to ask for urine and blood tests to help reach a diagnosis. It is not unusual for families to have had more than one affected child before the diagnosis is established.   The second phase of the disease, which is where Bobby is at now, is characterised by extremely active, restless and often very difficult behaviour. Some children sleep very little at night. Many will be into everything and one parent writes 'taps are a great favourite, we're always having floods'. Many like to chew; hands clothes or anything they can get hold of 'even the contents of ashtrays are not missed out.'   Sadly, language and understanding will gradually be lost and parents may find it hard not being able to have a conversation with their child. Many will find other ways of communicating, perhaps using sign language such as the Makaton system. 'She loves me to talk to her and she smiles with her eyes, almost talks with them and her whole face lights up with love.' Some children never become toilet trained and those who do will eventually lose this ability.   In the third phase of the disease Sanfilippo children begin to slow down. They become more unsteady on their feet, tending to fall frequently as they walk or run. Eventually they lose the ability to walk. Life may be more peaceful in some ways, but parents will need help with the physically tiring task of caring for an immobile child or teenager and with all the changes necessary to provide for their care.   Please dig deep and donate to support Bobby and all of those affected by MPS and Related Diseases.  Thank you very much.   Ross

Ross' London Marathon 2012 fundraising page

Ross' London Marathon 2012 fundraising page

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